Hi new here and desperate for some help. I’ve been on 100mcg of levothyroxine for years then end of last year my TSH went over 8 so does was increased to 125mcg and monthly blood test after that was fine. Fast forward about 6 months I started to feel awful again like the walking dead. So got a blood test to check and now my TSH is 0.08 T4 is 13.8 so fine but my T3 is 3.4 I know it’s only slightly lower. I also have a goiter in my neck which is new and have been referred for 2 week ultrasound of my neck. I agreed with dr to reduce the 25 mcg every other day and then have another blood test but I’m confused as I’m showing both over and under active results. And the symptoms weight gain is massive feeling dead horse throat sensitive to heat. Just wondered if I need any other blood test and if this has happened to anyone else?
Thanks
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Kermit79
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Are you always getting same brand of levothyroxine?
Are you taking any vitamin supplements?
What sort of age are you.....?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s?
Ask GP to test vitamin levels NOW
Bloods should be retested 6-8 weeks after any dose change
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hi thanks for your reply. Brand of levothyroxine hasn’t always been the same. I take vitamin D spray once a day I also take omega 3 daily. I have Hashimotos and I am 40. I have anaemia and take low dose daily ferrous gluconate. I’ll contact my gp to get those extra blood tests order thanks and I’ll make sure I haven’t had anything before the blood test never done that before but thanks ever so much for your advice.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Hi thanks for replying. My results were TSH 0.08 range is 0.35 - 3.5
T3 was 3.4 range is 3.8 - 6.0.
I also have been slowly developing a goitre and it was only noticed by a work colleague who had been Working at home and when she came back noticed my neck.
But my TSH is under also it’s 0.08 and lowest of the range is 0.35. By FP said my results showed both under and overactive?? My T4 is 13.8 range is 7.5 - 21.1 I’m getting so confused with this all. But my meds have been reduced to alternate days Between 125mcg and 100mcg levothyroxine. So should I go back to 125 mcg everyday?
But my TSH is under also it’s 0.08 and lowest of the range is 0.35.
There's not much you can do about that. The last thing you would want to do is lower your dose to raise the TSH. And, dosing by the TSH is just plain wrong. It's the FT3 the most important number. And as both your FT3 and TSH are under range - well, TSH ALMOST under, not quite - it rather looks like you have a sluggish pituitary.
By FP said my results showed both under and overactive??
Well, that's just stupid! lol A low TSH doesn't automatically mean that your thyroid is over-active. There could be all sorts of reasons for a low TSH. And, if he doesn't understand that, he shouldn't be treating thyroid patients.
T4 is 13.8 range is 7.5 - 21.1 46.32%
T3 was 3.4 range is 3.8 - 6.0. -18.18%
So, as you can see there, there's quite a gap between your FT4 and your FT3, which more than likely denotes poor conversion - i.e. need for added T3. BUT those results also show that you are under-medicated. Your FT4 should be about 75-80% through the range. Yours isn't even mid-range. You need, I should say, at least two increases in dose at six weekly intervals, if not three. I'm afraid your FP has no idea what he's doing.
Grey goose thank you FP was GP sorry typo. OK I’ll Book an appointment and say I need to go up. When he said I was both under and over I did say how can it be both and he didn’t really answer. To be honest I feel so rough and I have done for months. I just wanted to GP to say ah this is what’s up do this. No such luck. Thank you for your advice.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
A goiter used to be a symptom or visible sign of hypothyroidism, but in the era of 'proper' thyroid treatment, this should not happen and it is an indication that you are definitely under medicated.
A TSH of 0.08 is nothing to worry about, if your T4 and T3 values are in range - and these are in the low ranges anyway, indicating that you are not sufficiently medicated. A 'suppressed' TSH is very common in people treated for thyroid disease, the thyroid senses the external hormone supply and shuts down the own production of thyroid hormones, as it is not necessary. In any case in most people reducing the hormones as a result of 'suppressed' TSH will not necessarily get the TSH in the 'normal' range, it will just further reduce your hormones available to you, which is counter productive.
If you are not well on your current dose, I would go back to the previous dose and see. You may even need to increase further to get T4 and T3 up more for you to feel better.
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